Saturday, December 7, 2013

How Are You?

I’ve always hated that question. It’s asked countless times a day, most often in passing as part of a quick and breezy greeting. “Hey, how are you”, says one person acknowledging another, typically with all the sincerity of a society lady blaming a loud fart on the dog. For that very reason – that lack of any real authenticity behind it – I’ve long disliked this social grace, even back when I was healthy. The standard response to “how are you” is almost always “good” or “great” regardless of whether or not things are good or great. Sometimes the question is met with a tired attempt at sarcasm, “same shit, different day…”, or some equally worn-out rejoinder.

Now that I’m stuck with a chronic debilitating illness, I find this most frivolous of salutations especially grating. I’m sitting here half paralyzed with my ass firmly planted in a wheelchair, how the hell do you think I am? Footloose and fancy free?

Of course, one’s condition at any particular moment is all relative, and despite the fact that I am indeed sitting here half paralyzed with my ass firmly planted in a wheelchair there are naturally times that I am better off than others, but all in all my situation, even when broken down to its most basic elements, is a complex matter. Coming up with a response that summarizes my current state in just a few words is a virtual impossibility, and even on those occasions when I happen to be feeling pretty good or even great, a quick “good” or “great” just doesn’t seem sufficient to capture the manifold nuances of the situation. My usual response these days is a tepid “oh, I’m hanging in there, I guess”, but more and more, when I’m feeling particularly grumpy I find myself tempted to pin my interrogator against a wall with my 300 pound wheelchair and proceed to let them know precisely how I am.

So how am I?

Physically, I’m a wreck. My right arm and leg are completely useless, most often more hindrance than help, and my left side is gradually (but not gradually enough) spiraling the drain as well. Due to a rare and disastrous reaction to intravenous steroids called avascular necrosis, my hips and shoulders are quite literally broken, keeping me in a nearly constant state of pain. That very same pain keeps me from sleeping for more than an hour or two at a time before whatever position I’ve dozed off in becomes so excruciating it wakes me, so I’m sleep deprived and constantly exhausted. Whatever disease process has hacked away at my spinal cord has also taken a buzz saw to my endocrine system, sending my hormones completely out of whack, the physical impact of which can be debilitating, setting up a medical situation so complicated it’s proving almost impossible to untangle. For reasons unknown I get fevers almost every night, which don't play well with my extreme heat sensitivity. Other than that I’m as fine a specimen of human physiology as can be found on God’s green earth.

How am I?

Emotionally, hard as it may be to believe, I’m in a better place now than I was for most of the time I was healthy. Back then I was often wildly neurotic, angst ridden, and for reasons only my decades long list of therapists may ever know, perpetually intent on finding reasons to be miserable. Not that I was friendless or socially isolated, for despite all of my psychological foibles I managed to maintain a boyishness and wield a sarcastic wit, the combination of which came together to form a certain kind of charm (or was my thriving social life due to the fact that I developed the habit of pinning cash to my garments?). By and large, though, I was almost always in a constant state of discontent, an emotional expanse whose boundaries ranged from mild trepidation to downright anguish. Though I was always quick to laugh, quite often at myself, nasty little gremlins were always flitting around inside my brain, twiddling with knobs, switches, and dials labeled insecurity, anxiety, and self-doubt.

Now, physically saddled with a mysterious and chronic progressively debilitating disease, most of my old psychological kinks have somehow been vanquished. Not that I’ve become the poster boy for robust mental health, but it seems that having a genuinely horrendous problem to deal with has negated any pathological need I had for seeking out reasons to be anxious. Now that my overactive psychology has been given a tangible target on which to focus, albeit a dreadful one, I find my anxieties have quieted down considerably. There’s not much time or energy to be wasted on existential angst when your entire right side is doing its best impersonation of a mannequin. Not saying my situation doesn’t suck, as it sucks huge hairy monkey balls, but it definitely keeps me grounded in reality, and has given me reason to channel my energies towards self-preservation rather than self-doubt.

How am I?

Frightened. Nah, that’s too tame a word. Let’s try absolutely, completely, thoroughly scared shitless. That’s more like it. How does this omnipresent state of fear wash with my aforementioned newfound mental stability? Very easily; anybody who wouldn’t be scared shitless at the future prospects presented by a constantly progressing crippling illness would have to be considered a prime candidate for Basket Weaving 101 at an inpatient mental facility. Try as I might to stay centered and focused on the now, it’s almost impossible to completely shield oneself from glimpses of a potentially horrific future. And we’re not talking about an abstract threat here, as the reality of the situation has been personified by some of the most famous victims of the disease (Annette Funicello, Richard Pryor, etc.). Can there be any prospective future more dreadful than the real possibility of being reduced to a very alert brain miserably serving a tortured life sentence silently trapped inside a prison of completely useless flesh and bone? Enough said. I’d better stop now before I soil myself.

How am I?

Dauntless. Since my diagnosis almost 11 years ago, I’ve endured trials and tribulations that my former hypochondriacally neurotic self would never have imagined I could withstand – much less simply shrug off, as I have most of them. I’ve been poked, prodded, irradiated, pounded and punctured more times than I can count, all with nary a yelp of protest or consternation. I’ve been PET scanned, CT scanned, gallium scanned, and MRI scanned so many times that I now possess far more pictures of the inside of me than the outside of me. I’ve racked up well over a dozen spinal taps, had needles the size of fire hoses simultaneously stuck into the veins in both arms during plasmapheresis, and have orally and intravenously ingested all kinds of bizarre and potentially poisonous concoctions dressed up as medicines, the vast majority of which have been as effective as voodoo powder (maybe less so, as I haven’t yet tried voodoo powder). I’ve watched more and more and more of my body be transformed from vital to useless over the course of a short decade as this creeping paralysis has done its dirty work, enduring ever mounting indignities as the endless losses have piled up, and yet I’ve somehow been successful in fending off the impulse to call it a life and permanently take up the fetal position. Big ups to the powers of mindfulness and the teachings of the ancient Eastern philosophers.

How am I?

Angry. Pissed off at the universe for cursing me with this vexation, derailing my life just when it seemed I’d learned some hard lessons and things were finally going my way. Despite my inner demons I found myself a great girl and forged a successful career in a highly competitive industry, only to watch it all come crashing down around me. Well, all except the great girl, who’s so great that she miraculously hasn’t headed for the hills. I’m furious at modern medicine, which despite all of its whizbang technology and blaring headlines of paradigm shifting medical advances is left dumbfounded and rendered completely impotent by dozens of horrific maladies, the vast majority of which leave those whose job it is to cure them not knowing their asses from their elbows. I’m seething at so-called healers who are content to label diseases “autoimmune”, when it’s clear that an immune system gone haywire is a symptom of some much greater ill. Newsflash: we haven’t evolved over millions of years to simply have our immune systems wake up one day and decide, “fuck it, I think I’ll go rogue and just attack this son of a bitch”. I’m infuriated at a medical research model that has become so corrupted by the corrosive influence of big money that it’s completely lost sight of its primary objective: finding ways to eradicate diseases, not fancy new formulas for turning them into cash cows.

How am I?

Grateful. Despite all the terrors of and the destruction wrought by my disease, I’m cognizant that in its own twisted way getting sick was my ticket to freedom, and maybe even to a dash of wisdom. Yes, I’d found success in a “glamour” industry, but truth be told I always hated working. Though the positions I held required varying degrees of creativity, many of them found me stuck in buttoned-down corporate environments, the kind of places that the younger, more idealistic me proclaimed loudly to all who would listen that I’d never wind up. Some people flourish in such a business environment; I suffocated. I found the regimentation of the 9 to 5 lifestyle absolutely soul sucking, asphyxiating my spirit and smothering my passions. I somehow allowed myself to stray far from the path I had once sworn to follow, and found myself too trapped by the realities of adult responsibilities and my own fears to find my way back. My disease, or more precisely, the early “retirement” it forced upon me, turned out to be my emancipation.

Some find the transition to life on long-term disability nearly impossible. Not me. I took to this relative life of leisure as if I were to the manor born. I suddenly had the time to rekindle interests and appetites that had far too long been neglected; writing, photography, history, zombie movies, ancient aliens. Perhaps more importantly (but really, what could be more important than zombies and ancient aliens) I was afforded the perspective to examine the healthy life I was forced to shed, and thus come to fully understand just how trivial were most of the concerns that had previously tied me up in knots. Worries over relatively minor financial setbacks, social status, broken romances with the wrong people, fixations on material goods – all so pathetically frivolous in the face of the disease that now beset me. The Eastern philosophies I'd read but had never been quite able to incorporate into my healthy daily life now became vital instruments of survival. That Siddhartha wasn't just whistling Dixie.

Perhaps the most important thing I've learned is that the greatest blessing on earth is a quiet night spent with the people you love who love you back (this includes dogs).

36 comments:

Another brilliant piece. And not to trivialize your situation for an instant, but it occurs to me that, with respect to your pre and post MS angst, it sounds like you need Woody Allen to invent a new type of movie.

Funny, in an earlier draft of this post I did compare myself to Woody Allen, but then thought that was very egotistical of me. But the pre-MS me definitely had shades of Woody Allen. Was always a huge fan, still am, despite the fact that Woody's private life leaves much to be desired. I think it's important to separate the artist from the individual in all forms of creative expression. Not sure I would've liked many of my favorite artists, but that shouldn't stop my ability to enjoy and appreciate their work.

WOW~ so wonderful. Right on Marc! I too (never thought i could sit still long enough to meditate and now have difficulty standing for any length of time) say that mediation and gratitude has saved me. Go figure the irony of it all. When people ask me how I am, I simply say "I'm happy". Just beautiful. Thanks!

Happy to hear that you are able to answer "I'm happy", even if that is a gross simplification of the situation. Meditation, gratefulness, and mindfulness do go a long way in keeping things in perspective when dealing with the disease (as well all of life's other messiness).

ah – but that response is not so simple. I’m not walking around like a happy idiot. It’s the answer that stops the pitiful looks or questions from some people, handles the others who tell me ‘gee you really look good!’, and stops my brain from digging for some response that doesn’t make me feel like I’m telling people who don’t really want to hear it, how I really am. I find it just resolves all those things nicely and helps me to feel more empowered too.

Thank you, Marc - again! I have saved many of your writings in my own journal. I tend to read them, save them, and re-read them. I think of you many times, have one of your moving photographs and consider myself a WK groupie ;)

Wow! I have a groupie! Cool, maybe now I can start smashing up hotel rooms…

Seriously though, thanks so much for your kind words. I'm incredibly grateful that folks can relate to the stuff I write on this blog, and that I've helped some of my fellow travelers down this bumpy road. The success of WK was completely unexpected, never imagined more than a few dozen people ever looking at it.

Hope to be posting some new photos soon. I'll use your comment as motivation…

Thanks so much. Sorry that I made you cry, though, even if it's a "good cry". Well, if it is a good cry I guess that would be therapeutic, so maybe I shouldn't be sorry about it. The old me probably would've obsessed about this, but now I think I'll just let it go…

I look forward to your new posts, and they do not disappoint. One of the better lines written about the modern state of auto-immune disease discussion: "I’m seething at so-called healers who are content to label diseases “autoimmune”, when it’s clear that an immune system gone haywire is a symptom of some much greater ill. Newsflash: we haven’t evolved over millions of years to simply have our immune systems wake up one day and decide, “fuck it, I think I’ll go rogue and just attack this son of a bitch”. Brilliantly said!

Thank you. The whole idea that some diseases get labeled "autoimmune" as if that solves a problem drives me absolutely nuts. Whenever I read that a disease is considered autoimmune I instantly know that the medical world just doesn't know fuck all about it. "Autoimmune" might as well directly translate into "we're absolutely clueless".

So much smoke and mirrors going on in the medical world that one really has to read between the lines of much of what is published. Terrible state of affairs when such cynicism is so well warranted.

Hi, tried to translate your comment using Google Translate, but it didn't to such a good job. Think I got the gist of it though, and it's good to know that my words are reaching even some folks who are not native English speakers. Yes, having a pair of iron balls does help deal with the disease, and in fact I think having the disease forces your balls to turn to iron.

(Sorry ladies, but I'm sure you understand what I'm talking about. There really should be a female equivalent of the expression "having balls". Seems wrong to say that a woman has balls, but I know so many who do – metaphorically, of course.)

Well, the answer to "to what purpose life" is, I think, quite mutable, changing with time and circumstances. Sticking to rigidly to any dogma can lead you into some turbulent waters. I think any lived philosophy that truly provides shelter from the storm must be flexible enough to bend with the winds, which, as we know, can sometimes reach hurricane force.

I truly appreciate your sympathies, but try not to cry too much. I'm not crying for me (well, maybe once in a while), so no need for anybody else to, either. Thanks for your thoughts…

Lisa, I totally agree. When anybody asks "how are you?" with the obvious expectation that I MUST be terrible, I feel like smashing into their shins with my wheelchair and then asking them how they are. Alas, must keep such things in the realm of imagination, lest I wind up with a prison record.

Marc,Oh yes "the age-old greeting, How are you?"I usually answer "I'm here" and leave it at that. There's no way I'd ever be able to explain how I truly feel most days on this rollercoaster ride called @#$%! ms.Thx for expressing so well what many of us sometimes feel.Hope you are feeling stronger everyday.

Dee, I really like the answer "I'm here". Pretty much fits any situation, and is most definitely the truth. Brilliant.

Thanks for the kind wishes, I am feeling a bit better every day. Not back to where I was before my latest medical mishap, but definitely a lot better than I was just a month ago. Appreciate your thoughts…

I must agree," I'm here" is a brilliant and sly (in a good way) answer. Absolutely something I will use.

What I would like to answer is "I would tell you but you really and honestly couldn't possibly understand the multitude of day to day challenges which my husband and I live with as a result of MS and Anterior Horn Cell disease (yeah, I hit the lottery there, didn't I - natch).

Happy Holidays and all the best to Marc. his wife and his legions of supporters.Alys

Thanks for this post Marc ! It reflects acurately most of the moods I also experienced (but not so harshly) on my MS path. I am seating In my wheelchair, a glass of wine by the hand , after a day of work, happy to remember I quarelled today with my boss on a subject I disagreed with by simply concluding with a smile to his growing threats : " After all, you know, I really don't mind...."

I just finished reading Stephen Hawking's 'My brief history' Noticed he also enjoys his disease prevented him from being assigned to boring lectures and tuitions most researchers have to endure, to concentrate on his favorite theme : astronomy. May be yours is writing and philosophy ?

This is my first post on your blog Marc. Since my diagnosis of PPMS, I have read your blog posts with great anticipation of your next post. You write so well and you say what many of us have difficulty articulating. The "How are you" question is something I think we all struggle with quite often. Thank you for your insights!

You know why I like my JH neurologist? He never says the word Autoimmune to me. He never pretends he can help more than ease any symptoms. I'm PPMS, he doesn't make me go for MRIs any more unless I say I want one. He does do eye scans to monitor any progression. If I contact his office, he replies within 12 hours and I can depend on it.. I think it's as good as it gets right now. Marc, you made me laugh and cry at the same time. And know it's OK to get angry/broken sometimes but not all the time!

marc, as always, your words say what i am feeling, and wish i had the bravery to say. i find there are two kinds of people - some ask how i am and don't really want to know (they get the "pretty good."), and those (far fewer) who really want to know. they get the "how much time do you have?" maybe that is one good thing about my isolated life, that i come across few people who ask how i am. my wife asks first thing in the morning, and i say, how would i know, i just got up?

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...